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result(s) for
"Self-management support"
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Self‐management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies
2016
Background Receiving adequate support seems to be crucial to the success of self‐management. Although different empirical studies separately examined patients' preferences for self‐management support (SMS), an overview is lacking. Objective The aim of this qualitative review was to identify patients' needs with respect to SMS and to explore by whom this support is preferably provided. Search strategy Qualitative studies were identified from Embase, MEDLINE OvidSP, Web of science, PubMed publisher, Cochrane central, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PsycINFO. Inclusion criteria Articles needed to meet all of the following criteria: (i) focuses on self‐management, (ii) concerns adult patients with rheumatic diseases (rheumatoid arthritis and fibromyalgia), a variant of cancer or chronic kidney disease, (iii) explores support needs from the patients' perspective, (iv) uses qualitative methods and (v) published in English. Data extraction and synthesis A thematic synthesis, developed by Thomas and Harden, was conducted of the 37 included studies. Main results Chronic patients need instrumental support, psychosocial support and relational support from health‐care professionals, family/friends and fellow patients to manage the chronic condition. Relational support is at the centre of the support needs and fuels all other types of support. Discussion and conclusions Patients do not self‐manage on their own. Patients expect health‐care professionals to fulfil a comprehensive role. Support needs can be knitted together only when patients and professionals work together on the basis of collaborative partnership. Dynamics in support needs make it important to regularly assess patient needs.
Journal Article
Using co‐design methods to develop new personalised support for people living with Long Covid: The ‘LISTEN’ intervention
2024
Introduction Many Covid‐19 survivors are living with unresolved, relapsing and remitting symptoms and no ‘one size’ of treatment is likely to be effective for everyone. Supported self‐management for the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co‐design framework to guide replication and evaluation. Methods We used the improvement methodology, Experience‐Based Co‐Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from ‘Bridges Self‐Management’ (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co‐designed resources are also central to Bridges. Adults who self‐identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co‐design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content. Results People with LC (n = 28), and HCPs (n = 9) supported co‐design of a book (hard‐copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co‐design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co‐design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments. Conclusion We have developed a new personalised support intervention, with core principles to be used in one‐to‐one sessions delivered by trained HCPs, with a new co‐designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the ‘LISTEN’ intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions. Patient and Public Contribution The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co‐design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co‐authors of this paper.
Journal Article
Understanding supported self‐management for people living with a lower‐grade glioma: Implementation considerations through the lens of normalisation process theory
2024
Background Supported self‐management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self‐management support (SMS) for people living with a lower‐grade glioma (LGG)—who often have complex support needs—are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. Methods We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. Results We generated supporting evidence for all four NPT constructs and related subconstructs, namely: ‘Coherence’, ‘Cognitive participation’, ‘Collective action’ and ‘Reflexive monitoring’. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP‐support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help‐seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. Conclusions This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self‐management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. Patient or Public Contribution People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings.
Journal Article
Development of mobile health–based self‐management support for patients with lung cancer: A stepwise approach
Aim To develop self‐management support platform on mobile for Chinese patients with lung cancer. Design A stepwise approach with combination of methods. Methods Literature review was carried out to construct preliminary framework and develop detailed content for self‐management modules. A semistructured interview was conducted to elicit preference in the content and platform of self‐management modules with 15 patients with lung cancer. Delphi study was performed to evaluate and improve the content of modules with 13 experts. A pilot study was conducted to test the mobile health–based self‐management support modules with 13 patients with lung cancer. Results A social network software‐based WeChat public account “Symptom Self‐Management” for patients with lung cancer was developed and preliminarily tested with positive feedback. Three modules were designed and presented, including symptom management (cancer‐related fatigue, cough, dyspnoea, pain, nausea and vomiting), emotion management and role management. Conclusion This study showed that patients with lung cancer have diversified supportive care needs after discharge. A bottom‐up and stepwise approach to develop mobile health–based self‐management support tool has shown to be feasible and valuable. Theory guidance, user requirement exploration, evidence‐based information and expert evaluation are key elements of the process. Implications for Practice The WeChat Public Account “Symptom Self‐Management” could be used as sustainable platform to support patients with lung cancer in dealing with common challenges. It provides professional information, self‐assessment tools, self‐management skills and peer‐support platform. Information presented in both text and audio forms enables patients' easy access to the platform.
Journal Article
Supporting self‐management after traumatic brain injury: Codesign and evaluation of a new intervention across a trauma pathway
by
Ling, John
,
de Sousa de Abreu, Maria Inês
,
Hollinshead, Lucinda
in
Brain
,
Brain damage
,
Brain injured people
2019
Background Supported self‐management (SSM) is a recognized approach for people with long‐term conditions but, despite the prevalence of unmet needs, little is known about its role for people with traumatic brain injury (TBI). Objectives To codesign an SSM intervention with people with TBI and evaluate feasibility of implementation through multidisciplinary staff across a trauma pathway. Setting and participants People who had previously been admitted to a Major Trauma Centre following TBI and family members participated in a series of codesign activities. Staff attended SSM workshops and used the intervention with patients in acute and rehabilitation settings. Methods We used Normalization Process Theory constructs to guide and interpret implementation. Knowledge, beliefs and confidence of staff in SSM were assessed through pre‐ and post‐training questionnaires, and staff, patients' and families' experiences were explored through semi‐structured interviews. Qualitative data were analysed thematically, and clinical measures were mapped against a matched sample. Results Codesigned resources were created and used within an SSM approach for which 110 staff participated in training. Evaluation demonstrated significant differences in staff SSM confidence and skills, following training. Qualitative evaluation revealed adoption by staff, and patients' and families' experiences of using the resources. Challenges included reaching staff across complex pathways to achieve collective implementation. Conclusion This is the first project to demonstrate feasibility of SSM for people after TBI starting in an acute trauma setting. Through an open approach to codesign with a marginalized group, the SSM resources were valued by them and held meaning and relevance for staff.
Journal Article
Mobile application to support oncology patients during treatment on patient outcomes: Evidence from a randomized controlled trial
by
Graetz, Ilana
,
Schwartzberg, Lee S.
,
Curry, Andrea N.
in
Ambulatory Care
,
Cancer
,
Cancer therapies
2023
Background Cancer treatment requires substantial demands on patients and their caregivers. Mobile apps can provide support for self‐management during oncology treatment, but few have been rigorously evaluated. Methods A 3‐month randomized controlled trial was conducted at a large cancer center to evaluate the efficacy of an app (LivingWith®) that provides self‐management support during cancer treatment on quality of life and health care utilization. Patients in chemotherapy treatment were randomized into the intervention (n = 113) and control group (n = 111). Intervention group participants agreed to use the app weekly for 3 months, and all participants completed a survey at enrollment and after 3 months to evaluate changes in quality of life and health care utilization. Results Retention rate was 75.4% with 169 participants completing the follow‐up survey. The intervention group reported 0.74 fewer medical office visits (p = 0.043) and 0.24 fewer visits with a mental health professional (p = 0.061) during the 3 and month intervention compared with controls. There were no significant changes by study group in quality of life, or emergency room and urgent care visits. Among intervention participants, 75.3% reported using the app and on average, used it 11.7 times during the 3‐month intervention. Reasons for not using the app among intervention participants included lack of time, lack of interest in apps, and usability challenges. Conclusions and Relevance Apps are inexpensive and scalable tools that can provide additional support for individuals coping with complex cancer treatments. This trial provides evidence that a well‐designed oncology support app used during chemotherapy resulted in fewer clinic visits. Still, nearly a quarter of participants randomized to the intervention arm reported never using the app due to personal preference and usability challenges, which points to future opportunities for calibrating target user population and improving user‐centered design. Clinicaltrials.gov identifier: NCT04331678. This randomized controlled trial of oncology patients provides evidence that a well‐designed oncology support mobile app used during chemotherapy resulted in fewer clinic visits.
Journal Article
Mediating engagement in a social network intervention for people living with a long‐term condition: A qualitative study of the role of facilitation
2020
Background Successful facilitation of patient‐centred interventions for self‐management support has traditionally focussed on individual behaviour change. A social network approach to self‐management support implicates the need for facilitation that includes an orientation to connecting to and mobilizing support and resources from other people and the local environment. Objective To identify the facilitation processes through which engagement with a social network approach to self‐management is achieved. Method Thematic analysis was used to analyse data from a longitudinal study design using quasi‐ethnographic methods comprising non‐participant observation, video and qualitative interviews involving 30 participants living with a long‐term condition recruited from a marginalized community. Results Findings centred on three themes about the social network approach facilitation processes: reversing the focus on the self by bringing others into view; visualization and reflection as a mediator of positive disruption and linking to new connections; personalized matching of valued activities as a means of realizing preference elicitation. Discussion and conclusions Engagement processes with a social network approach illuminated the relevance of cognizance of an individual's immediate social context and forefronting social participation with others as the bases of self‐management support of a long‐term condition. This differs from traditional guided facilitation of health behaviour interventions that frame health as a matter of personal choice and individual responsibility.
Journal Article
We need to talk about purpose: a critical interpretive synthesis of health and social care professionals’ approaches to self‐management support for people with long‐term conditions
2017
Background Health policies internationally advocate ‘support for self‐management’, but it is not clear how the promise of the concept can be fulfilled. Objective To synthesize research into professional practitioners’ perspectives, practices and experiences to help inform a reconceptualization of support for self‐management. Design Critical interpretive synthesis using systematic searches of literature published 2000–2014. Findings We summarized key insights from 164 relevant papers in an annotated bibliography. The literature illustrates striking variations in approaches to support for self‐management and interpretations of associated concepts. We focused particularly on the somewhat neglected question of the purpose of support. We suggest that this can illuminate and explain important differences between narrower and broader approaches. Narrower approaches support people to manage their condition(s) well in terms of disease control. This purpose can underpin more hierarchical practitioner–patient communication and more limited views of patient empowerment. It is often associated with experiences of failure and frustration. Broader approaches support people to manage well with their condition(s). They can keep work on disease control in perspective as attention focuses on what matters to people and how they can be supported to shape their own lives. Broader approaches are currently less evident in practice. Discussion and conclusion Broader approaches seem necessary to fulfil the promise of support for self‐management, especially for patient empowerment. A commitment to enable people to live well with long‐term conditions could provide a coherent basis for the forms and outcomes of support that policies aspire to. The implications of such a commitment need further attention.
Journal Article
Beneficial self‐management support and user involvement in Healthy Life Centres—A qualitative interview study in persons afflicted by overweight or obesity
2020
Background Relapse is high in lifestyle interventions involving behavioural change and weight loss maintenance. The purpose of lifestyle self‐management interventions offered at Healthy Life Centres (HLCs) is to empower the participants, leading to self‐management and improved health. Exploring beneficial self‐management support and user involvement in HLCs is critical for quality, improving effectiveness and guiding approaches to lifestyle change support in overweight and obesity. Objective The aim of this study was to explore how persons afflicted by overweight or obesity attending lifestyle interventions in Norwegian HLCs experience beneficial self‐management support and user involvement. Method Semi‐structured in‐depth interviews were conducted with 13 service users (5 men and 8 women). Data were analysed using qualitative content analysis. Results One main theme was identified: regaining self‐esteem and dignity through active involvement and long‐term self‐worth support in partnership with others. This main theme comprised four themes: (a) self‐efficacy through active involvement and better perceived health, (b) valued through health‐care professionals (HPs) acknowledgement, equality and individualized support, (c) increased motivation and self‐belief through fellowship and peer support; and (d) maintenance of lifestyle change through accessibility and long‐term support. Conclusion Service users’ active involvement, acknowledgement and long‐term self‐worth support from HPs and peers seem to support self‐management and user involvement and may be some of the successful ingredients to lifestyle change. However, prolonged follow‐up support is needed. A collectivistic and long‐term perspective can integrate the importance of significant others and shared responsibility.
Journal Article
Group affiliation in self‐management: support or threat to identity?
2017
Background Self‐management is considered important in chronic illness, and contemporary health policy recommends participation in support groups for individuals with chronic conditions. Although withdrawal from or non‐participation in support groups is an important problem, there is limited knowledge about individuals' own motivation for participation in or withdrawal from self‐management support groups. Objectives To investigate how individuals with type 2 diabetes perceive participation in group‐based self‐management support. Design This is a qualitative focus group study using a semi‐structured interview guide. Setting and participants Sixteen participants diagnosed with type 2 diabetes were included in the study. Individuals with and without group affiliations were mixed in three focus groups to trigger discussions. In the analysis, reoccurring themes of engagement and discussions between participants were focused within a theoretical frame of institutional logic. The focus groups are seen as social spaces where participants construct identity. Results Both participation and non‐participation in group‐based self‐management support are associated with dealing with the stigma of having type 2 diabetes. Negotiations contribute to constructing an illness dignity as a response to the logic of moral responsibility for the disease. Discussion and conclusion Contemporary policy contributes to societal understandings of individuals with type 2 diabetes as morally inadequate. Our study shows that group‐based self‐management support may counteract blame and contribute in negotiations of identity for individuals with type 2 diabetes. This mechanism makes participation in groups beneficial for some but stigma inducing for others.
Journal Article